EMIL YUSUPOV

Emil was born with a spinal cord defect. He was diagnosed with spina bifida at the Children’s Republican Clinical Hospital of the Republic of Tatarstan in Kazan. It’s a fault in the development of the neural tube and surrounding bones which leaves a split in the spine with a spinal cord cyst.

When the baby was 1.5 months old, he had an operation as a result of which part of the fat tissue was removed. The boy needed annual clinical MRI scan to be carried under sedation. Regular massage, therapeutic gymnastics and rehabilitation courses became an integral part of the boy’s lifestyle and put the whole family to the test.

In 2014 the boy was diagnosed with yet another problem – acute pyelonephritis, acute urinary retention. In spite of the regular rehabilitation procedures the boy has developed a club foot and started walking on tiptoes. His general condition was deteriorating and this year he was diagnosed with tethered spinal cord syndrome.

Although the current diagnosis is more than serious, Emil happens to be a cheerful boy. He can read, he likes listening to stories and he is planning to go to school next year. The boy is especially fond of constructing imaginary cities from Lego building sets. What’s more, Emil is keen on horses. He never forgets to bring them a treat when he is on a visit to an eco-farm.

In a way, the “tethered spinal cord” diagnosis is similar to a time bomb. As the boy is growing older, his health is deteriorating. He may finally find himself confined to a wheelchair.

The Assuta Medical Center in Israel has offered to operate on Emil on 26 of March. The cost of the operation required is 51543 US dollars.